My Opera
My Objectives
Thursday, August 30, 2012 8:52:16 PM
With this blog, my goal is to give MSK patients and their families personal and supportive information so that they might feel less alone. Having your family play an active roll in your MSK life is extremely important in your mental and emotional well being.
When I was diagnosed, I didn't really understand the scope of what was happening to me or anything about the disease that had been overrunning my kidneys for close to three decades. I was finally diagnosed with MSK when I was 26 after a hellish second pregnancy, but for 26 years my kidneys were allowed to wreak havoc on my system and make all of my doctors think that I was crazy. Looking back at how sick I was as a child, it amazes me that it was not diagnosed sooner - but that goes to show that MSK is not something most doctors normally look for. As a child I had chronic urinary tract infections along with a nagging back pain, but I was always extremely active in sports so the back pain was chalked up to the sports and the urinary track infections were caused by not wiping properly...according to my family doctor. And now at 32, my kidneys have decided building stones is old news and now they build boulders!
Although I have bilateral MSK (it's in both kidneys), I very rarely have a problem with my right side. It is my left kidney that seems to give me the most trouble and the most pain. Problem solved! I'll have my left kidney removed! Seemed logical to me - why keep an organ that is barely functioning and causing an incredible amount of pain? My doctors, on the other hand, laughed at me. For three years I begged non-stop to have this absolutely useless organ (in my opinion) removed. I even asked my OB to remove it during my 3rd C-section; it would our little secret, she could toss it, I would even pay her to do it. The problem is, the kidneys play a very active and direct role in the function of almost every other organ in your body. They work together with the liver to filter toxins, they help regulate blood pressure, and they produce key proteins needed to stimulate red blood cell production in your bone marrow. Although you are able to live a long, normal healthy life with one kidney, I have two diseased kidneys. Having one removed would only put unnecessary strain on the remaining one and speed up the damage that has already started.
Keep in mind, simply having MSK alone does not mean that you will have complications and build stones. In fact, a large population of MSK patients are asymptomatic. The existence of a very large number of MSK patients without any symptoms creates a number of disadvantages for the rest of us, including whether or not our doctors truly believe we hurt. I have suffered countless battles with doctors unwilling to accept that I was in any type of pain. Unfortunately, the current stand most doctors take is that the stones don't hurt while they are up inside the kidney, and (the famous one) your kidneys don't have enough nerve tissue to feel pain. I am very thankful that I do not get the constant urinary tract infections that some MSK patients do, but I do pass stones. I pass them DAILY, and without the help of pain medicine there is absolutely no way I would be able to function and be the wife and mother that I need to be. This is why new research is needed. There is an online petition, started by Mary Maston MSK Advocate, circulating to get more funding for research in MSK patients. If you have found this page chances are you are no longer asymptomatic and MSK is changing your life. The link to the petition is at the bottom of the page and I encourage all to sign it. Like I have said earlier, any and all research for MSK is important!
Important things to know about the petition- a donation page will pop up after you sign your name. The donations do NOT go to MSK research they go directly to the website that creates the petitions. Also, in the comment box please post your comment on how MSK if affecting/effecting your life. This can be directly and indirectly. You don't have to have MSK to sign it, my husband signed it. My MSK affects his life also!
http://www.ipetitions.com/petition/medullary-sponge-kidney-msk-patients-unite-one/
When I was diagnosed, I didn't really understand the scope of what was happening to me or anything about the disease that had been overrunning my kidneys for close to three decades. I was finally diagnosed with MSK when I was 26 after a hellish second pregnancy, but for 26 years my kidneys were allowed to wreak havoc on my system and make all of my doctors think that I was crazy. Looking back at how sick I was as a child, it amazes me that it was not diagnosed sooner - but that goes to show that MSK is not something most doctors normally look for. As a child I had chronic urinary tract infections along with a nagging back pain, but I was always extremely active in sports so the back pain was chalked up to the sports and the urinary track infections were caused by not wiping properly...according to my family doctor. And now at 32, my kidneys have decided building stones is old news and now they build boulders!
Although I have bilateral MSK (it's in both kidneys), I very rarely have a problem with my right side. It is my left kidney that seems to give me the most trouble and the most pain. Problem solved! I'll have my left kidney removed! Seemed logical to me - why keep an organ that is barely functioning and causing an incredible amount of pain? My doctors, on the other hand, laughed at me. For three years I begged non-stop to have this absolutely useless organ (in my opinion) removed. I even asked my OB to remove it during my 3rd C-section; it would our little secret, she could toss it, I would even pay her to do it. The problem is, the kidneys play a very active and direct role in the function of almost every other organ in your body. They work together with the liver to filter toxins, they help regulate blood pressure, and they produce key proteins needed to stimulate red blood cell production in your bone marrow. Although you are able to live a long, normal healthy life with one kidney, I have two diseased kidneys. Having one removed would only put unnecessary strain on the remaining one and speed up the damage that has already started.
Keep in mind, simply having MSK alone does not mean that you will have complications and build stones. In fact, a large population of MSK patients are asymptomatic. The existence of a very large number of MSK patients without any symptoms creates a number of disadvantages for the rest of us, including whether or not our doctors truly believe we hurt. I have suffered countless battles with doctors unwilling to accept that I was in any type of pain. Unfortunately, the current stand most doctors take is that the stones don't hurt while they are up inside the kidney, and (the famous one) your kidneys don't have enough nerve tissue to feel pain. I am very thankful that I do not get the constant urinary tract infections that some MSK patients do, but I do pass stones. I pass them DAILY, and without the help of pain medicine there is absolutely no way I would be able to function and be the wife and mother that I need to be. This is why new research is needed. There is an online petition, started by Mary Maston MSK Advocate, circulating to get more funding for research in MSK patients. If you have found this page chances are you are no longer asymptomatic and MSK is changing your life. The link to the petition is at the bottom of the page and I encourage all to sign it. Like I have said earlier, any and all research for MSK is important!
Important things to know about the petition- a donation page will pop up after you sign your name. The donations do NOT go to MSK research they go directly to the website that creates the petitions. Also, in the comment box please post your comment on how MSK if affecting/effecting your life. This can be directly and indirectly. You don't have to have MSK to sign it, my husband signed it. My MSK affects his life also!
http://www.ipetitions.com/petition/medullary-sponge-kidney-msk-patients-unite-one/
